Did your doctors have difficulty diagnosing your disease?

[nash2]

A large survey of medical professionals asked them about how the profession was doing in its diagnosis and management of liver disease. It might surprise you to learn that the doctors themselves don't think there is agreement on how to even diagnose the problem. That might explain why there are so many different thoughts on the details of how to deal with the day to day challenges. How do you feel about your experience?

[Millie09]

Oh i could write an essay on my journey..

[nash2 Partner in reply to Millie09]

you should do it here. Lots of people have no idea about this disease and patient stories have great teaching value

[Mary505]

The diagnosing part was easy yearly blood work started it. Then cat scan, fibroscan. But once I was told what was wrong I really felt like I was abandoned. Ok here is your disease now your on your own. Then when I started reading about it. I panicked. Best thing I did was find this page. Nash2 you were very helpful in explaining, getting me going in the right direction. I appreciate that.

[tdeboy in reply to Mary505]

I know me too..so much pain I deal with over 4 years now..I've changed my diet, exercise when my bones don't hurt so bad..Dr told me it was a guessing game..I'm on my third Dr..I quit going to ER when the pain was so bad after 2 years ..they just say it's your liver n deal with it. It's to the point now, they can't give me pain meds as the pain increases ten fold..they say my body can't break down the pain meds..that just raises lots of new questions no one can answer..I live life to the fullest n know one day I won't be here..not from lack of trying for sure..really sad Drs areore interested in $ than their patients

.or let me correct that..some Drs..

Hoping new Dr I have figures this out..I have 20 grandkids who are my heart & soul..they'd truly be lost without me.. God bless you!

[Millie09]

Totally agree with you mary505, my worst part i will never forget was in 2010 when i was finally discharged from gastro at a difference hospital where i was admitted and diagnosed 10yrs ago .my last check up and on leaving the consultant said to me "no doubt we will see you again ".. yes i have ALD and was sober 2 yrs then.. talk about no faith from your own gastroenterologist 😞. Kick in the teeth that was ! Will never forget his words.. Thank god i am.at QE hospital liver unit now.

[TraceyAlbinson]

My docter(gastro )said loose weight,and even though you stopped drinking years ago damage is done ,oh your father died at 59from cirrhosis (alcoholic),He Said oh yeah you probably got it ,from him ,it’s hereditary!/That’s when I knew in my heart he was grasping,at straws I lost 35lbs went back he says nothing ,this is really scary!!

[nash2 Partner in reply to TraceyAlbinson]

Hi Tracey sadly that attitude is common. Many of us have encountered it. You are in good place here as we all get it. If you can try to see a hepatologist. Many gastro docs are useless to dangerous because they don't look for liver disease early then tell you there is no treatment once you get symptoms. What they learned in school is wrong but we pay for it. You are on the right track with weight loss, it is a treatment but won't cure most people. It can, however, make your life easier while we wait for research to help us

Wayne

[TraceyAlbinson in reply to nash2]

Thanks I’ll do just that